Graduation Year

2005

Document Type

Dissertation

Degree

Ph.D.

Degree Granting Department

Special Education

Major Professor

James L. Paul, Ed.D.

Co-Major Professor

Darlene DeMarie, Ph.D.

Committee Member

Michael Angrosino, Ph.D.

Committee Member

Daphne Thomas, Ph.D.

Keywords

Developmental delays, Parent-child relationships, Family understanding, Qualitative research, Ethnography

Abstract

This study explored the way members of one family understand the presence of developmental delays, especially Asperger Syndrome, in the children of that family. Specifically the study sought to glean how each parent constructed individual understanding of the presence of Asperger Syndrome in their twin, 13 year-old boys. It also sought to explore how each twin experienced the phenomenon of being labeled a child with Asperger Syndrome, and how their experiences affected their growing understanding of the syndrome. A third son, 10 years old, with PDD-NOS, was also a central focus in this study in that he also created and shared experiences that affected his, his brothers’, and his parents’ understanding of Asperger Syndrome.

Findings indicate that each member of the family constructs an individual understanding of the syndrome, based on personal experiences and attitudes. While this is not surprising, it is interesting to note how these divergent constructed understandings mesh and mingle with each other in the family’s experiences. Both parents approached the onset of their boys’ Asperger Syndrome by sorting through very different world views and backgrounds. Yet both essentially define the syndrome in the same terms. They deal with their children differently, especially when juxtaposing similar tasks, i.e., helping with the child’s homework, yet they often describe the basic deficits each child has as if speaking from one voice.

Within the range of understanding how a learning difference affects a child, it is natural that there would be some denial and/or rejection of the effects on that child. This study found that to be quite true in this family. The study also found that the boys’ understanding was not that well developed, perhaps a function of some denial and/or rejection by the parents.

But perhaps not. The study asserts that this family, because of a strong support base and clear family bonds, may be approaching the time when family understanding blossoms. As no child will be able to understand some particular mental challenges prior to moving into the proper developmental stage of intellect, so too a family must move into the proper developmental stage of family understanding.

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